This blog is about our 5 year old little boy Seth and his battle with Severe Combined Immune Deficiency (SCID). At the point of beginning this blog he is being considered for a second bone marrow transplant in order to save his life. My aim is to provide a real account of his history and progress through diary entries, pictures and videos showing that the boy makes the most of his bubble!. I, his mother, will be the main contributor to this page, but its not about me. Comment, ask questions, do whatever you please this is not my page but ours. I hope that this provides others with information on tackling a condition that 30 years ago would have lead to death. As well as giving family and friends a place to keep up to date with the news of his journey. #wearyellowforseth

Today: Taking it day by day….

Since my last post Seth has started to go in the right direction. His liver enzymes have come down a little – they were over 600 now they are at around 400. So still high but better. The level of HHV6 in his blood has reduced from 10 to the 6 to 10 to the 4. This won’t mean a lot to many reading this blog (as it doesn’t me) but its gone from 1,000,000 parts in one ml of his blood to 10,000 parts in his blood. Again this is still very high but a good drop.

squirting water at the nurses

supporting primary immune deficiency week

taking bloods (complete with sterile field) from the ward doll – to help Seth deal with everything happening to him

making daddy hit himself in the face

beating daddy at guess who

playing the guitar and singing to fireman sam

At the same time, his T cell and neutrophil numbers had returned, but were clearly donor cells as his Graft Versus Host Disease had returned. So his skin is red and dry and his has broken skin and sores on his hands, and he is not able to maintain his HB (red blood cell) level so was needing at least one bag of blood per day.

When he was very ill last weekend and the doctors were worried about him they added a second anti viral drug. It is rare to use them together, but they did. These drugs are Foscarnet and Ganciclovir. Also on Saturday 19th April Seth started the pre conditioning for his transplant with a drug called Campath. This drugs wipes out T cells, B cells and NK cells (basically all your immune cells).

Since this drug has started Seth has not required blood as often, and the virus in his blood has improved. Last week and the weekend he was getting temperatures of 39.4 and above and paracetamol was not bringing it down significantly, also his respiratory rate had increased. So since Sunday he has been a lot brighter and Tuesday and Wednesday was back to his normal cheeky self keeping us busy having ‘parties’ in his room (which involves playing the guitar whilst fireman sam songs are played on daddies phone) – even the nurse have to get involved!

Tonight, however, he has spiked his first temperature in nearly 5 days. He has been given IVIG (antibodies) today which does make him spike a temperature, but he has also vomited. So we will see what the bloods bring tomorrow and remember the importance of taking it day by day. It’s a high risk transplant the journey is not going to be smooth.

On the consent forms for the transplant the hospital has to put a chance of failure in Seth’s case it is around 50% so 1 in 2 chance of success. It may seem good – we have 50% chance of Seth getting through this. But at the end of this the percentage will not matter. If one of the things that the doctors are worried about happens it doesn’t matter what the chance of it happening was, just as if we come through the other side successfully, it won’t matter what the chance of success was.

Does Seth get what is going on?

I have explained it to him and he understands that he needs to stay in hospital. I said to him that Mummy and Daddy and Hugo all have magic inside them that make them get better when they are ill. I said that Seth was born without this magic which is why he has been poorly so much and now Daddy is going to give Seth some of his magic. It may not be the best description, but he has since told this to his dad and appears to understand that he has something missing that means he gets ill and daddy is going to help to try to fix it. He accepts that he needs to be in hospital.

In fact the two things he gets most upset about are – having his bath and brushing his teeth!!!

-6 he has the above plus Fludarabine and they stop the buffy coat (neutrophils that they give that go in and fight infection then die) so he will have even less protection. Nik starts GCSF injections which stimulate his bone marrow so he over produces bone marrow cells. He will be given this injection everyday until harvesting. The side effects may cause him to have bone pain as his marrow is working harder.

-5 Treosulfan and Fludarabine again

-4 Fludarabine

-3 Fludarabine

-2 Fludarabine

-1 Nik goes to the Freeman Hospital to have his bone marrow cells harvested.

0 – Transplant day! The official description is infusion of CD3 TCR alpha/beta/CD19 Depleted PBSC. He will also start MMF (an immune suppressant so they can slow the speed at which the graft takes over the marrow) and Buffy Coat will be restarted.

What are we concerned about?

We will Seth everything, you never know how he is going to respond, but the main areas we know may cause a problem are:

Liver – the liver already has some damage, chemo may cause further problems, and the T cells from the graft when it is given may go to the liver and cause problems there. This is a worry.

Lungs – Seth has extensive damage to his lungs from the infection he had at 6 months old. The chemo could cause problems there, and the T cells from the new graft may also go her and cause problems.

Human Herpes Virus 6 – we know this virus is currently live in Seth, and, although the levels have reduced dramatically, it is still very high. We could lose control of this virus and the only real way it can be resolved is with Seth having his own immune system to fight it.

Once the transplant has been done we wait, we wait for the bloods every day, waiting for his bloods to change. We want to see his neutrophils coming up within 10 to 20 days post transplant. Other cells will follow. Once he has these cells bloods will be taken to identify who’s they are – we want them to be Nik’s.

So that’s it. Tomorrow it begins and we have 6ish weeks of anxiety, not knowing what the next day will bring.

Thank you for sharing your journey with us. I think of Seth every day and pray he will get through this okay. If he’s anything like his Mammy and Daddy, then he is one tough cookie and will be fighting every step of the way to better health. My heart goes out to you all. Take care of yourselves.

Day by day is truly the plan at hand…I am sure some days feel endless and you are just amazing to take the time to share. We, as always, on this side send our support and prayers to you all! Be well Seth and family! Hugs from Memphis, Tennessee 👍

Sending you the strength, courage & ‘magic’ for the journey ahead. As we approach a year post BMT for our son Herbie I read your blog and feel transported back in time. Herb & I are thinking of you all xxxxxx

Hi Leanne we send Seth all our love and pray that all goes well for him .i
I look at his picture everyday and love to read your updates on his progress . Hope your husbands treatment also goes well for him too.Stay strong you are so amazing and can’t imagine what you are going through. Our thoughts are with all of you including little Hugo too xxxx

You are the strongest family I could ever imagine!! Thank you for the postings. I look every day to see updates and I know they are so hard for you to keep up with. God bless you for doing them. We are all on this journey with you and we all are praying for the same outcome. May the future hold a Seth Lane with an immune system and a long and happy life. Love you little man!!!!

Thanks for the update. I check all the time. I genuinely think of Seth every day – I scan through the posts so fast to check for good news first….. A wee boy with the cutest wee face who I’ve never met has stole my heart. And I think my boyfriend is a little jealous…. !!! On a serious note I’m always rooting for Seth and just want nothing more than for him to get through this. 💛💛

When finding out about Seth online, I was seriously taken back. His story has and continues to make me a stronger person each and every day. I live by the motto of take every day as it comes… And hopefully one day I’ll get the chance to meet Seth in person! Keep strong little fella’ you WILL fight this. Fight it like you are putting out a fire. Fireman Seth to the rescue! Hugo has a hero to look up to already :). Much love from Leeds, Lorren x x

i just happened upon Seth on the wear yellow for Seth day! That day, I started praying for your handsome little man and have included him in my prayers every night since. He seems to be a strong little guy and I’m sure that God will give him the strength to get through this. May the lord be with you all and know that a bunch of us in VA are praying for this little guys recovery!

Seth, you have captured my heart. I want so much to see you thrive and grow and enjoy the very best in life. You are such a beautiful boy. Your smile radiates joy and love. Thank you for your bravery, it’s truly inspiring.

Dear Seth,
I am thinking of you everyday and am keeping my fingers permantly crossed that this journey will lead to the road of normality for you and your family.
I have a little boy who is two who has rare CGD, he will have his BMT at GOSH in June. You are a real inspiration in that you are always smiling even at the toughest times, lots of love xxxxx

Thank you for the update we were wondering how Seth has been. We wore the yellow for him and passed his message around and our friends were yellow for him as well… He is still in our prayers and we do appreciate knowing what’s going on with them and how he is he’s just an adorable child that wants to live a regular life…

All the magic is going to work as his mom told…little fireman you are just going to go through all of it and be fine and normal all of us are praying for you each day so nothing can go wrong..stay strong baby💛

Hi,
I’m glad things are starting to go better for Seth. I think about him every single day. I hope and prayer that his procedure goes well as we’ll as your husbands. I was wondering if Seth got the package I sent him? I want to make sure it got there and if it didn’t it should be there in a couple days. You are all in my prayers and I can’t wait for the next update.
With love<3
Miranda

I just want you to know that you and Seth are in our prayers. It takes strength for a family to get through this and I know you will all be holding hands in the end. May The Lord be with you and keep you in his hands.

Hugo is going to hear Seth’s story when he grows up from the hero himself. He’s our baby Hero. The strongest one the world has ever seen. He’s going tO come out smiling wanting to play his guitar. You’ll see 🙂

Thank you for the update Mrs Lane… I believe that seth will surpass everything.he is a great blessing and trully a hero… Please tell seth that I love him I’m praying for his healing and the magic he needs will be inside him soon☺️… We salute your family… Sending my hugs and kisses to our little fireman!! God Bless you and may God strenghten you everyday

Seth you and your family have inspired myself my family & friends, we take nothing for granted. My two boys and the children in my nursery look forward to seeing your pictures & me reading your blogs. We wish you all the luck in the world sweet boy always in our thoughts & prayers 🙏😇 best wish love Gem xx

Wow… Tennessee, Wisconsin, Canada, Leeds, and so on… Leanne your little boys story has captured the world. You must be so proud of him and how he fights on. And your strength and energy to share the situation with us all never cease to amaze me. Seth you are a hero… Much love. Nicki

What a brave little soldier you are Seth. And what brave parents you have. God please bless this beautiful family, and bless Seth on this journey. Sending all the love and prayers i have gathered from friends and family to you and yours. We all stand beside you and support you.

We are praying for little Seth. I know it is rough for you all, but I am glad he is a bright spot in so many people’s lives. Thank you for the updates. We will keep praying.

Seth from New Mexico. From: ourlittlehero To: paleopetra@yahoo.com Sent: Thursday, April 23, 2015 3:41 PM Subject: [New post] Taking it day by day…. #yiv4967834745 a:hover {color:red;}#yiv4967834745 a {text-decoration:none;color:#0088cc;}#yiv4967834745 a.yiv4967834745primaryactionlink:link, #yiv4967834745 a.yiv4967834745primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4967834745 a.yiv4967834745primaryactionlink:hover, #yiv4967834745 a.yiv4967834745primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4967834745 WordPress.com | LJLane posted: “Since my last post Seth has started to go in the right direction. His liver enzymes have come down a little – they were over 600 now they are at around 400. So still high but better. The level of HHV6 in his blood has reduced from 10 to the 6 to 10 to the” | |

Thank you for sharing Seth’s journey, both in words and pictures. I am learning so much with every update. I want you to know that Seth is on my mind every day and I can’t wait for the day he gets to go home. God bless you all!

We keep our yellow poster to Seth on our fridge as a reminder to pray for him. I have a SCID child in my life who is as full of love and life as Seth. I cling to the promises of God’s Word. Tonight, as I read your update and pray again for Seth, I am thinking of the words in Matthew 18:10 that remind us that the angels of children always see the face of the Father. Wow, to think that the angels that guard our children are always in the presence of God. May you feel His peace.